are true stories sent in by today's caregivers:
As of 12/14/04
I became guardian of my mother, now in care center ($5,000+/mo) and
her rather large property/home, etc. She is out-of-pocket
due to Medicare rules, fractured pelvis, etc. and WI due to her not
consenting on health care POA for nursing home, protective placement,
etc. It is a virtual nightmare as I am 3.5 hours from her and cannot
return more than every 3-4 weeks for mileage due to rules/regs. She
is financially okay, but I have own meltdown due to not working full
time for obvious reasons. I have been caregiving 10+ yrs and belonged
to CAPS in mid ‘90s in Peoria, which dissolved.
Problem today is that Alzheimer groups are mostly spousal and mostly
local folks. There is nothing via churches, hospitals as they focus
on other areas. I am basically alone here and it is very tedious
and discouraging. Fortunately, Central IL Area Agency on Aging has
good groups and sponsors free event tonight and tomorrow for caregivers.
Because of financial strains, I cannot join CAPS nationally but would
appreciate any feedback from long-distance caregivers in similar
situation. Thus far I have found no one who shares my particular
circumstance. I am 55+ and my life has changed forever, as most of
yours have. I would welcome any info from anyone in area.
My mom, 92, has been my whole life the past 12 years, and my devotion
remains. Those who have not been there and done that simply don't
know and can't empathize and I hate to "dump" on folks.
Family is far away and has own life, which is fine. I'd love to hear
from anyone near IL, IA or WI to share. I have no kids, etc. so really
do this alone so your stories are valuable. Thank you! Look forward
Carolyn Schuldt Hansen
I found this website out of desperation and reading several books
on how to cope with an ageing parent. I am the daughter-in-law and
I have taken care of my mother-in-law for 4 years. My husband has cared
for his mother for over 7 years.Over 7 years ago, his mother was in
a serious car wreck.
My husband cared
for both his father and mother during his first marriage and divorce.
His father died from Alzheimer’s .I met my husband
shortly after that. We eventually got married but my husband and stepson
had lived with his mother. It’s been 4 years taking care of my
mother-in-law. All the books I read do not have the parent living with
the caregiver. We haven’t had a normal marriage due to mom’s
constant care. She cannot hear or see well, wears hearing aids and
She’s 5'1 and at least 250 pounds and has diabetes. She has
fallen constantly over the years. She doesn’t do anything to
help herself and is constantly turning to us. If we refuse she gets
I’m 37, my husband is 42, but we are made to feel like 12-year-olds.
She lives to eat and with diabetes will eat a whole pie if I do not
watch her, so I find myself hiding foods from her at the doctor’s
advice but she’s resentful. She acts like my husband is her husband.
There is no privacy, no respect .between us. We have 4 children, only
1 living with us, but mom’s Parkinson’s is getting worse
and she will not even consider assisted living or anything other than
our services. I am not a doctor and I feel guilty because at anytime
she could fall but I am helpless. She has become more forgetful and
paranoid. She just stares out the window and sleeps all the time. But
the only control she still has is the reins around us.
We love mom. but I have health problems and my husband just found
out he has high blood pressure. How can we get her to see we have to
take care of ourselves and that after 7 years we need to turn the job
over to someone that is trained in what she needs. I am scared that
the stress could tear my husband and me apart or that my husband will
have a heart attack he gets so upset. She was in a rehab during the
summer because she fell. She was doing great: right diet and exercise;
something she will not do for us.
Are we suppose
to just watch her die? Her doctor has not been of any help just keeps
giving her more meds. Is there anyone who understands
this feeling? I am home with her all day and if we leave to go out
we are made to feel guilty. I feel I have given my all, but what do
you do when that’s not enough? My husband has a heart of gold
and has stood by his parents and now his mom. But I love him and am
scared the stress will affect him. If anyone is as lost as I am I would
like to hear from you.
Hello, my name is Debra and I will soon be 54 years
old. I have been a caregiver for the past 5 1/2 years for four different
three of whom have passed on — my mother, father and great aunt.
During that time, my husband was battling multiple sclerosis, but could
care for himself.
It was very rewarding to be able to care for my parents and give
them dignity and quality of life their last days on this earth. And
if I had to do it all over again, I certainly would! My father lived
with us for 4 years. after mom's passing and he was able to be in
our home and passed on to glory while I was at his bedside.
But now it is a different story. I went back to work so I could receive
a steady income, but the MS has progressed in my husband and he became
incapacitated and I had to let my job go. Even though he seems to
be stabilized and can transfer on his own to his power chair, I am
burned out and frustrated that I don't get help from any of my husband's
family who live close by. We have one son who lives three hours away
and has a 5-year-old son to provide for; so it would be difficult
for him financially to stop everything and help.
I awake every morning with anxiety about what I am going to do. What
if I need care? I need to be paying into my Social Security for my
future. I make all the decisions and handle everything, as my husband
cannot. I had to refinance our home to get a substantial amount of
cash to hold us over until I can figure what to do. The only income
we have is my husband's social security.
This is a problem that too many people face in our society. He doesn't
need skilled nursing and I don't want to place him on MediCal. I
placed my dad on MediCal and the state came after me for the medical
bills, as he was on the title with us on our home. The board and
care homes are very costly, at least in our area; they charge from
$2,200 to $3,000 per month. I know there is an answer to this problem,
but it won't come from our government. It will have to come from
a higher source.
Hi. My name is Leticia and I'm 37 years old. I have been married to
a wonderful man for 16 years and we have a son who is almost 3 years
My mom was diagnosed with Alzheimer's 6 or 7 years ago. She started
taking Aricept right away and it seems like it's helped her not get
any worse. She'll never be back to the way she was but I'm thankful
that she still knows us and is still "there" mentally.
She and my dad lived together in Santa Rosa and my husband, son and
I lived in our home in Santa Rosa. My dad was my mom's main caregiver.
He had to help with dinner, cleaning, laundry, bills and errands
as she was no longer allowed to drive.
My dad used to be a heavy drinker but I finally managed to get through
to him and get him to stop (for mom). I know, I know, he should stop
for himself but I used guilt and anything else I could think of to
get him to stop. He did.
In August of 2004 my dad had a stroke. My Husband and I realized
that now they both needed us and couldn't live alone. At the time,
dad couldn't drive so when he got home from the hospital, I would
go over to their house in the morning before work and after work
to do the cleaning, cooking, laundry, bills, etc. Eventually, I quit
my two part-time jobs because it was all too much. My house and family
were suffering because I spent so much time at my parents. So, my
husband and I decided that maybe we should move into a bigger house
and have my parents live with us. We had to move out of the county
so we could afford a four-bedroom home. We got lucky and found a
place that not only could we afford but we just love it and love
the new area we live in.
We all moved in together in October of 2004. In the beginning it
was great. Sure, I still had a lot of people to care for and a lot
on my plate but I was managing. Things started getting worse in January.
My dad started drinking again...a lot! I tried everything to get
him to stop and he says that "I'm 65 and not going to change".
I even told him that there was NO WAY we would have ever invited
them to move in with us if he was drinking. Well, we invited when
he wasn't drinking and now he's here and drinking. It's not like
I could (or would want to) ask him to move out but sometimes I get
so mad that I wish he just would. I think he figures that he can
drink and doesn't need to worry about mom anymore because I do everything
around here for her and everyone else.
My mom and I have always been close and it's hard for me to see her
in a different light. She told me the other day that she hates that
her daughter has to do so much for them. She also hates my dad's
drinking but doesn't know what to do about it. My dad has even looked
into assisted-living arrangements for seniors. My mom said she would
never do that. Why would he think we would move over 300 miles away
from our families just so they could move into that kind of place?
I just don't get it.
I do so much for everyone and I keep reading articles on how you
have to take time for yourself, go for a drive, do this and do that.
I wonder if it's really possible. If I ever try to do something alone,
my son cries because he wants to go or my mom looks lonely so I end
up taking them both. Time for me? Ha! I don't know what that's like
anymore. Thought about getting a part-time job but can't afford to
leave my son in day care and WILL NOT leave him with my parents.
If dad wasn't drinking, I would but...
The other day I was so stressed that I just wanted to run away and
not come back. I have never felt that way before and it was kind
of scary. My husband has been the best thing in my life. He works
10 hours a day/6 days a week. I try really hard not to vent to him
because I don't want to stress him out. I end up talking to him more
than I had planned and he is so understanding and caring. I think
he feels like he wants to do something to help but doesn't know what
My dad has gotten to the point of expecting me to do things for them.
He can walk now and drives in town. He used to do the laundry and
no longer does. He gives me a few bucks at the end of each month
and just expects that I'll continue to do everything for them! Right
now, their laundry is in the machine. I will end up folding it and
mom will put it away.
I started this letter with the intention of talking about mom and
I realize that I wrote mostly of dad. I feel like my head is spinning.
The only reason I have time to write this now is because my grandma
(mom's mom) is here visiting for a month and is with mom right now.
My son is playing outside. He's already been in my den three times
since I started this.
I'm really feeling like I'm at the end of my rope. I love doing things
for mom because she appreciates it and she needs the help. I just
wish I had more "me" time. I have a brother but he lives
over 300 miles away and just started a new job. He also is separated
from his wife and lives with friends so it's not like he can take
my parents for a month. I wish I had a clone! Actually, about four
clones would be great.
Anyway, I've rambled on and on enough. I hope this letter isn't too
long that no one will read it. Maybe it will just help me to get
this off my chest - I don't know.
Thanks for listening!
I took care of my parents during their final years.
I'm not sure who benefited the most, but we grew so close that Mom
and I could practically
read each other’s thoughts. It wasn't unusual to hear a conversation
something like this: Mom--Are you thinking what I'm thinking? Me--
Yes. I think it's a great idea. Mom--Do you think he'd go for it? (referring
to my father) Me--I think so. Should we tell him?
This went on especially at Christmas time. Mom and I enjoyed shopping,
sometimes just window shopping, or a movie, even the state fair, but
we got out and that was what was important.
Dad benefited because he preferred staying home, going to his computer.
Mom and I got out, with each other's company and Dad didn't have to
worry about an emergency that way. I benefited because I was going
through a very hard time in my life and had their support.
After her heart attack, Mom's memory was much worse, so I learned
that I had to decide if something was worth arguing about. If it was
just a minor thing - like a line in a show, or who did what, Mom was
right. Even if she was wrong, it wasn't that important. But if it was
something like taking medication, that was worth the static that was
generated. We worked out a system so I'd set the pills up at the beginning
of the week, then it would be easy to see if they ad been taken. She
would remind me to take my pills too, so it worked for all of us. With
her diabetes, I went to the doctor with her and helped listening, as
well as reporting things that were relevant.
Dad was devastated when Mom passed away. I think that he had planned
on going first. He lived about a year and a half longer before he joined
Mom. Dad had emphysema, heart problems and a dozen other things wrong,
and towards the end he couldn't walk very far.
We had learned to improvise, because Mom had a tendency to fall down
towards the end. Luckily she never got hurt. We used one of the kneelers
that can be purchased in a garden store - the type that can be inverted
and used as a short seat. This gave her something to push herself up
while I lifted. Another improvisation was when Dad couldn't call out
if he needed help. I had one of those alarms to be carried in a purse
that had an alarm if one was attacked on the street. Very loud! Dad
had this with him, so even if I was behind a closed door at the other
end of the house, I heard him. One short beep would mean help, but
whenever it's convenient; if it was continuous it was an emergency.
I am still in the house they bought when my brothers were born and
Mom and Dad are still here. I can feel their presence now and then.
Mom wouldn't let a little thing like death stop her from visiting.
The other day Mom was putting me on the guilt trip that she used when
I was a teenager! (I guess our babies never grow up, because that's
about the way I think of mine too - kids in need of supervision.) The
best way we handled any situations that came up was humor. Learning
to turn a situation that may otherwise bring one to tears into humor
carried us through many trials.
One time Mom had fallen, she was in the hospital for a hip replacement.
She wanted to see the staples that were now on her side, but couldn't
quite see it. So I brought my camera in and she stood in the bathroom
while I shot her hip. Of course, that was the time a nurse had to choose
to come in.
Another time I look back on is when Mom had a case of pneumonia; there
wasn't room at the hospital, so she had to go to a different one further
away. Then Dad landed in one - this time it was nearby. And I had an
uncle from out of town that was at the V.A. hospital. So my day usually
consisted of getting to the hospital visiting and having lunch with
Dad, catching a bus (I can't drive) to the hospital downtown to visit
and have dinner with Mom. Then on to the V.A. to visit with my uncle
until visiting hours were over.
I wish that there was an organization like the
one in the U.K. It's called Age Concern. Since so much of their population
has two working
adults, (when the parents get older a “granny-flat” is
added to the house of one of the children). It's a completely independent
apartment - private entry and all, but an internal door to the house.
Age Concern helps older adults that are left alone most of the time.
A bus that is equipped to handle wheelchairs and people that cannot
take the big steps comes around on certain days to take them to the
building where they have their tea and scones and they socialize in
the morning, then it's bingo in the afternoon. The prizes aren't valuable
- things like a can of peas - but it's a thrill to win something. There
is a nurse there if someone needs help taking a bath - the tub has
a lift if it's needed - and she does a few other things too, like checking
blood pressure or sometimes just an ear if there are any questions.
(Can anyone tell we lived there for a few years? I loved it!) Enough
of the epistle.
Hello, my name is MJ and I am 36 years old. My mother, who is 62,
has Alzheimer's. She has been diagnosed for three years now. My father
died of a heart attack when I was 21. Needless to say, it is very difficult
to find myself so young with a 12-year-old son to raise and now become
the primary caretaker of my mother. At this time in ones life, I do
not enjoy the advantages of having parents as my mother is no longer
capable of providing anything for me. I am now acting as the parent
and her the child. I only have the memories of her love and care in
my life and am grateful for all she gave.
I never thought I would be in this position. The hardest part is
that I will one day soon be alone in this world with no parents.
My son, who never knew his grandfather, will grow up without a grandmother
too and all the special things grandparents do for grandchildren.
I feel a tremendous loss knowing that I am unable to go to my mother
for friendship, advice, support and love. I find it extremely difficult
to cope at this point often vacillating from anger, extreme sadness
and hopelessness. Although I struggle with my emotions I do feel
guilty for wanting a so called "normal" adult life and
all that that brings.
Thank you for providing a place I can speak freely without condemnation.
My mother passed
away four years ago very quickly from non-Hodgkins lymphoma. After
that my father continued to live alone in my parent’s
home and was completely independent.
Well, last August he had a stroke that left him with some short-term
memory loss and weakness on his left side. After rehab my brother
and I decided that it was best if he moved into an assisted living
facility as my house is small and I have thre children, work full
time, and am practically never home. My brother, on the other hand,
has a nice home, no children, but flat out said that he didn't want
dad living with him. (They have never gotten along)
I am extremely happy with the facility in which dad is living, but
my problem is now that he has become very demanding and calls me
repeatedly throughout the day with questions on trivial matters.
If I don't answer the phone or call him back right away, he keeps
calling. I have had to put my cell phone ringer on silent because
he keeps calling me at work. He also expects me to do everything
for him such as make all his appointments, accompany him to all doctor's
visit (even though the home he's in provides a driving service),
come have dinner with him, do his shopping (again, the home provides
the driving) etc. I realize that he misses his freedom, but he makes
no effort to get involved in the activities offered at his facility,
but then will complain about being bored. He refuses to come to any
of his grandchildren's activities (football games, track meets, plays,
high school graduation, etc.), but then complains because he never
sees anybody. My family took him to dinner last week for Father's
Day, but he just sat there staring into space and hardly said a word
to any of us. It was not enjoyable at all. He refuses to make an
effort, but still expects me to jump when he needs something.
I cannot do everything asked of me. I have taken so much time off
from work to do things for him that I have already used up my vacation
time for this calendar year. My brother will stop by and see dad
and go to dinner every so often, but does little else.
The other day I had only gotten three hours of sleep and was extremely
tired the next day. Dad called me at work and asked me to take him
to dinner that night. I told him that I was very tired and just wanted
to go home and sleep. He was agreeable, but kept saying "Well,
if you happen to feel better, come by and pick me up." Then
he called later on in the day to see if I was still tired because
he really wanted to go to dinner. I almost said okay out of guilt,
but I held my ground and told him "no". He has become so
selfish and so unconcerned with my needs.
I am now trying to stand up for myself and not do everything he demands.
As long as I know that he's not being hurt in any way, then I just
have to refuse sometimes (like taking him to dinner). It's so hard,
I go from being angry to guilty and it's really becoming a strain
on me. Thanks for letting me post my story.
Well, I am really starting to feel like I am not doing anything right.
My Mom died the first of this year, she was only 55 and went into
diabetic shock and had a massive heart attack. My Dad and I were
with her. It was very unexpected. Since then I have kind of been
the anchor for everyone. I had no time for grief because I was tending
to everyone else.
I work with my Dad in a "family" business. That makes things
doubly hard. He is getting older and his health is not great. The
demands put upon me at work, at home and by my Dad are huge. I am
having a really hard time handling it all. It's hard to talk about.
I have so many fears and today it all has crashed down on me. I really
am at a loss. I want to run far and fast, but I know that the world
would fall apart if I did.
If anyone has any suggestions on coping with all of the stress, I
could sure use them. I do have a brother, but he doesn't work with
us and I have to really guilt him into doing anything. That's a whole
Thanks for listening.